has any one else been prescribed Tegr... - National Migraine...

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has any one else been prescribed Tegretol for migraine ?

HarleyQuinn profile image
13 Replies

my doc took my off of my prevantives i used to take topimax 600md daily but it became innefective so he took me off my meds and left me with just my immigran then the migraines snowballed in and i was back to my 24/7 migraine .. saw my gp today and he prescribed Tegretol, though the side effects are... wait for it Migraine and headache.. notto mention a few other issues .. which i already suffer with.. so go me !

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HarleyQuinn profile image
HarleyQuinn
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13 Replies

Yes I took Tegretol for a few months and had two really bad migraines whilst taking them. I came off them and now only take Pizotifen 1.5mg at night and my migraines only occur every few months now. I also had daily wake-up headaches with Tegretol.

Hi HarleyQuinn I have just read your question with great interest the reason being is that I take Tegretol 400mg twice a day as a anti convalsant I have been seizure free for 11 years but due to the nature of my seizures have been advised to stay on the medication for the rest of my life but I also suffer from fortnightly migraines but I have never been told my any doctor that's my GP or the neurologist I saw that the Tegretol could be causing my migraines so when I next go to my GP I will be bringing this up with her. I don't know what the dosage is for migraine prevention? but my dosage is certainlty not helping but if it can cause migraines why is it being suggested as a preventative drug!! I am at present on 30mg of Amitriptyline which I have only just started so cannot comment if it is helping my migraines just got the dry mouth a bit tired first thing. Good luck to you....

HarleyQuinn profile image
HarleyQuinn

about 2 yrs ago i took Amitriptyline at 100mg dose for migraine though it didnt work, ive tried most medication for my migraines to my gp's dispair the best thing ive had is the topamax but due to the fact it became ineffective i was taken off it the nuerologist suggested some other medication which i cant recalbut i have low kidney functions at the moment so cant go on it.. :/ ive been told the tegratol i would have to work up to a possible dose of about 1200mg for migraine preventative before it becomes effective.. so only time will tell

teadrinker profile image
teadrinker

I've had tegretol and amitriptyline in the past but it was for chronic pain, so the dose may have been different. Anyway, neither worked, and as I was also having the most appalling migraines as well - which hadn't been diagnosed at the time - I assme it didn't work for me.

I hope you get some relief though, and the side effects aren't too awful for you. I remember nausea (though that might have been the migraine I suppose) and yellow eyes, though I was on gabapentin as well and my liver function went a bit off-kilter.

The only thing that's helped me is botox, which I am lucky enough to get on the NHS, but have tried a lot of other things first.

I'm glad you brought up the fact that you were on amitriptyline. I was put on a few years ago and have gradually reduced the dose from 100mg to its lowest 10mg. I want to come off for good because I visited the National Migraine Clinic and am following their advice which is resulting in me being migraine free.

However, now my GP doesn't know how to ween me off without me getting very sick. I lay for a few days on the sofa feeling sick and very dizzy and have to start taking it again just so I can go back to work.

I have tried every other day, which caused migraines because its not in my routine, and also cuting them in half - reducing the dose to 5mg which also caused a succession of migraines over three days.

Could you give me some advice about how you were weened off amitriptaline? I'm getting quite desperate.

HarleyQuinn profile image
HarleyQuinn in reply to ClareElizabethTheII

for me i just reduced the dose gradually , i was ill with it but just battled on through, i have never got rid of my migraines they went from a permenant 24/7 migraine which i had for 2 years to every 2 weeks i switched from ami to Topimax. they helped loads but never broke the bi monthly cycle i had migraines twice a month for 4 to 5 days at a time. since then i have built up a tolerance to topirimate and have now had to come off it as my migraines were escalating again to weekly and very severe, this is when i was started on tegratol .. which so far have had no real affect. but time will tell.

its a case of just reducing dose of the meds and battling through i think taking anti emetics for the sickness? maybe that will help

STeph

Goodness you have the patience of a saint!

Thank you so much for your response, I think I'm going to try cold turkey and suck it up. Looks like there are people suffering much less than me so I'm sure I can deal with it and if all is successful, move on.

Thanks again xx

HarleyQuinn profile image
HarleyQuinn in reply to ClareElizabethTheII

im not so sure its the patience of a saint.. its a case of having to deal with it . i knwo i have them bad but i know there are people worse off. the good thing about a site like this is it brings us all together. to help each other get through these things..

i would not wish migraine on my worst enemy they are the bane of my life and control so much of what i do after 6 years of them its like living with a beast .. but it wont go away so in a way i have to come to terms with what is there..

Steph

I definately think this site should be more advertised. I know so many migraine sufferers that can really benefit from a blogging site like this.

Maybe that should be our mission for Migraine Awareness Week this week.

HarleyQuinn profile image
HarleyQuinn in reply to ClareElizabethTheII

i agree, i know many sufferers who know very little about the condition, and sites like this would benifit from proper national help.. to get the message out there that Migraine is a condition that every one suffers from. and people out there can and will support you

Steph x

Angelface profile image
Angelface

Actually I have heard of Tregatol, a close friend of mine had epilepsy quite severely and used to take this medication to control her fits. I would say that this seems like you have severe type of migrane..If you are unsure of any medication, you should chat to your G.P.

good luck

Angela Webster

Susann profile image
Susann

I tried tegretol after my first migraine attack in my thirties but found for me it was little more than a placebo and did not help in any way. I see that tegretol is used for seizures and didn't know this. I find amitryptyline can work in the day for me if the air pressure suddenly becomes lower and it is going to rain. I can feel it in my head and often migraine is starting. Although I may still have to take sumaptriptan it can help me when I have a migraine near and feel confused or dizzy before it starts. The problem is I, like loads of people here, have many trigger points. Good luck, Harley Quinn.

nlburgess27 profile image
nlburgess27

I took tegretol when I was 20. Then I was on gabapinten. Side effect was loss of memory. Now I am on 300mg of topimax, 8mg of tizinidine daily, and 100mg of imitrex as needed. Works great, but on occasion I still have to use my pain meds. This migraine now, I've had for about a week and a half. My migraines aren't usually triggered by things, though some are. The majority of mine are because I have a pinched nerve in the base of my skull. I would say 9 out of 10 migraines are from the pinched nerve. Those are the ones that like to linger. The ones that are triggered by foods I can get rid of with the imitrex and last only a few hours to a max of 10.

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